Hello, I'm new to this site but have been suffering for over 10 years now. Last year I was having extreme kidney pain and my kidney is shrivelled. During an op to remove my kidney they found I had endometriosis in my uretea. The doctors told me this is very rare and I was only the second case he had seen. The cut the endo out of the tube and saved my kidney. To control the endo they ranted to give me a coil but another gynae doctor wanted to look further. He gave me an MRI scan and found that its back in my kidney tube, my uterus is stuck to my bowel, my left overy is stuck behind my uterus. I have multiple cysts and benign tumours on my overies and I have adhesions everywhere. Everything is stuck together. Now my gynae doc is having a meeting with my urologist, a bowel specialist and the radiologist. It looks like I'm going to have a hysterectomy but the problem is where it's all stuck to my bowel. 11 years ago I had my left Fallopian tube removed as it was stuck to my bowel. I'm in agony when I'm on my period and was in hospital 3 weeks ago and left with morphine.

Has anyone on here been through or got anything like this?

Could really do with chatting to people who understand what type of crap I'm going through. Thanks xxx

19 Replies

I am as yet undiagnosed so I can't give you any advice but OH MY WORD!!! You really have been going through it and my heart goes out to you. THANK HEAVEN for the Gynae Doc who wanted to check further!! You could well have ended up with the coil and sent away to suffer some more! Many ladies on here have had such terrible experiences with Gynae Docs so it is so reassuring to know there are some out there who trust their instinct and don't just go by what's in the text books.

I realise that doesn't help you with your pain, I am on Morphine too, but hopefully with such a team on your side, they can get you on the road to getting all this sorted, and you much more comfortable.

There are lots of lovely ladies on here willing to give you support, advice, and most of alll, real, first hand understanding of knowing the dreadful time you are going through.

You poor thing!!!.... I haven't had my kidney involved but I do have stage 4 Endometriosis which I only found out by accident last July. Since July I have had 2 operations, the last only being in December.

My uterus, womb, ovaries, tubes, bowel and rectom were all stuck together!! I had a polyp in my womb and chocolate cysts also. My consultant has been amazing and is now "keeping me under her wing" with regards to fertility. I have had 3 miscarriages in the past and now understand why! .... My husband and I are now trying again, the consultant has advised me that if I don't get pregnant naturally within 6-8 months it probably will mean I'm infertile. She has already started the ball rolling for us with IVF also just in case!

I am now waiting for my second period after my op which was due Monday (just gone), I have done a pregnancy test but it was negative, sadly. I'm getting very sharp low stomach pains though which worries me as to how painful this next period is going to be!!

I am due to start back to work this Monday, so was hoping my period would be done and dusted by then!! :0(

All this said, I guess I am one if the lucky ones..... I am 37 and have apparently had endo most of my life, I have never had the severe pain that a lot if ladies experience on this site. I had painful periods but thought that was normal?!

It came as a real shock last July when I found out, but almost a relief as although I had not had pain I was in constant fatigue. I had no life, would sleep every moment I could, straight after work, after tea, weekends, I was sleeping my life away, so when I found out this was a symptom of endo I was relieved to find out that I wasn't going mad!! I'm sure people just thought I was being lazy!!

Anyway I'm sorry to have rambled on.... Keep strong and remember if you ever need to rant, chat or just be heard, us endo ladies are always here for you!!

hi. I can partially empathise with you but yours sounds worse than my situation. had always had awful painful periods. Pelvic pain, depression pain pooing (not constipation) etc is had d and c hydro abrasion mirena coil, pill, cameras in, ultra sounds, seen several gynae eventually was told I had poly cystic ovaries. I'm 35 and thankfully have children but opted for a hysterectomy.

Saw my gynae he did another, ultrasound saw mass if cysts on one ovary and told me my uterus was tilted very far back but definitely pcos..

I woke from the hysterectomy, he came to see be and told me they had to leave my cervix because its stuck fast to my bowel and I have extensive endometriosis in the whold if my pelvis. Id never even heard of it so just said ok. when my husband visited he looked into endo, we asked the registrars questions which then arose for us finding more info and all they said was 'You need to ask the consultant'. 5 Weeks on i'm still trying to speak to my gynae my post OP appt isn't for another 5! Once spoken to gp he read the letter about the op to me and all it says is extensive endo was found so cervix was left. I asked the go questions he said I think that pain is endo or think this feeling is endo but need to ask my.elusive Gynae. I have tried calling several times a week, on Monday I wrote a letter to him. We live at the far end of Wales and he cover another bigger hospital than our local one. Of I don't get a response i'm going to speak to the health board x feel I have millions of unanswered questions x

I had fallopian tube stump (prev removed) found stuck to my bowel and ovary to bowel the other side 'not pleasant' plus loads of endo and adhesions in pelvis and stomach. My uterus according to Ultrasound is relatively ok but get horrible pinching in right pelvis, low back pain and bowel problems.

Sometimes I get pain round belly button and a bit higher up on the right just above my hip bone deep inside. I wonder other organs are involved. What symptoms did you get? Hope things improve for you.

Your situation sounds so scary and as a newly diagnosed (although explains a lot of my pains since I was 10 - three week long periods and immense pain) I am scared of seeing the gynae consultant for the first time. I had a ruptured ovary three years ago and at 25 I was told at least I have one remaining and lucky! It was only when my appendix burst last year that I was told it was endometriosis that had caused it and was referred to gynae! Unfortunately it took a year to get referred and in the meantime the pain is horrendous every day! I think mine is adhered to my bowel and bladder too as (appendix is tail of bowel) I have trouble passing water etc. I do hope that you get sorted and I hope my gynae doc isn't as mean as your team. I am only 28 and being advised to have a hysterectomy to solve the issue and I have no children but to be fair I'd rather that than the pain I have. Good luck to all the ladies I think this site is fab and helped me so far xx

I have never been diagnosed with endometriosis but I do believe I have it.

I have been suffering for over 14 years now, just turned 30 & this has been going on since I was 16!! HAD ENOUGH!! I have had 5 operations for adhesions, fluid in my womb, tubes & ovaries. I have lost a tube!! There is more to my surgeries but way too much to write. Basically I have suffered all my life & can't cope any more.

The doctors are useless, tell me to go home all the time. My periods put me to bed for days, the pain is immense. And the amount of blood I loose. By time it's gone, I spent 2 weeks getting over it ready for the next one.

I live everyday in pain, in my legs, in my tummy, my back always hurts. They told me when I was 16 there was nothing wrong. I asked to be referred to the hospital as I know my body & I feel wrong. Only to be told I am totally ruined & it was the worst scar tissue my surgeon had ever seen. He couldn't believe I was left like this. Again I was left for years, after complaining of constant pain.

I then took my Uncle to court in 2011 for 10 years of abuse against me. Got found guilty, 18 years....the next day to the hospital with pain, quick scan............bad news, had to have my left tube out as it was massive & causing problems (yet again I was right).

Had surgery every year for the last 5 years, depressed cos can't work properly. What about my life!!!

I have just been told I have Stage 0 Cervical Cancer & been told to come back in 6 months!!!

Also I have my period now after a biopsy & the pain is sooooo bad. So I ring my new doctors for pain relief I fought so hard to get from my old doctor for years. Only to be told my new doctor wouldn't give it to me, even though it's my medicine!!!!

Sorry for the rant but I can't cope, doctors don't listen & I am worried that I am being pushed to one side again just to get on with it.

Well I don't have kids.....you left me before & it was bad, now your leaving me again?????

It also does sound like endometriosis. I get a lot of pain on the left of my back and left leg. That is the side that is worse. Push for a diagnosis so you can get the proper treatment. My period turned up today. God I'm in agony. Just about coping with co Codamol and ibuprofen today but by tomorrow I will be on either my Diclofenac suppositories or the oramorph. Last month I was put in hospital with the pain and the going to give me gas and air.

I know about being pushed to one side. When I was in last month the urologist said that what I needed was good pain management and discharged me. My gynae doc looked at my MRI and said my uretea is blocking up again with endo so he shouldn't have spoken to me like that.

I'm sick of the hospitals to be honest. I have 2 kids. 10 & 7 and I am either writhing in pain or out of my face on pain killers. Not a god life for me or my kids.

Let me know how you get on Karen. You deserve the proper treatment. Someone needs to give you a break.

Thank you kindly for responding. Believe it because that is just the tip of the iceberg in my life....but that's another story lol. Loads of people say it sounds like you have Endo....when I had major surgery in 2011, they said there was no sign of Endo....can it be possible that I have it? I get pain in my right leg & all across my back. I have always had pain on the lower right part of my tummy. They told me my left tube had been causing the pain, so they take that out & I still get the pain constant! I push constantly for help & they laugh at me & my partner & say "what the hell do you want us to do? Test her for everything" so changed doctors, explain it all again, to be given constipation pills lol!!!!!! Same for me, my periods are a killer, off work for days, bed for days, don't eat, get dressed etc. But told to go home & take paracetamol lol......beyond that now.....14 years!

It's disgraceful how they treat you isn't it!! I feel for you Karen I really do. We put our lives in the hands of these people & they just think it's all a joke. Like I say to them, you have kids?? Yes, well I don't, so sorry this isn't funny to me!!

The words you wrote" Someone needs to give you a break" well that is the truth!! I feel like I might have to give up my job & go back on the sick just to cope with daily life.

Please keep in touch Karen - it's actually nice to have someone to talk to for once.

Oh Pooky, you poor thing! What a rough time you've had. I haven't had your kidney complications but I can certainly sympathise on the endo. My bowel is stuck to my womb, my ovaries pulled round the back & stuck together, endometriomas in each overy & a tangle of adhesions.

I was diagnosed a year ago but the surgeon I had was not qualified to remove the mess. I'm now booked in for surgery by a specialist next month.

I'm nervous about them unattaching my bowel but am putting my faith in the op and the fact that it may improve things. They are operating on me fir fertility reasons though & saud if I didn't want children they would manage it with drugs.

I really hope all works out fir you. Feel free to message me if you'd like to "chat" x

My endo was gluing all my lower abdominal organs together. I had it all over the bowel on the outsite and it was strangling/hitching it up either side so that I couldn't eat properly and when I tried I'd get horrific cramping and abdominal pain where my organs were in essence trying to rip apart. My uterus was also glued to the bowel and basically it was a mess in there.

I saw a specialist, she did an op saying there wasn't much endo and if she checked my bowel she'd have to cut my whole abdomen open. She tried to convince me my pain was gastroentoralogical and send me back to them. I didn't recover well from her operation and ended up back in A&E on morphine. There is the difference in quality of specialist. I saw a -proper- endometriosis specialist 2 months later and he found all of what I list above. If I can help in any way (I can't sympathise with the kidneys though :/ - ouch!!) please feel free to message me or anything.

Hi, really sorry to hear of all the problems you have been having my bowel is also stuck to my uterus found this out over 4 weeks ago when I had a colonoscopy where the surgeon found a mass? still not really sure what all this means as i am still waiting for anything to happen after this, not sure what the next step should be. Cant help but get more and more fustrated as time goes on which I really dont think helps the situation.

Not a good day today anyway off work again because im getting my period been inbed all day taking co codamol which just about takes the edge off as my doc wont perscribe anything stronger. Really dont know what to do feel totally alone today especially when im staying at my mums and she just tells me " mind over matter laura " wow really never thought of that thanks alot!! xx

We are having the same day!! I am in bed with my period too & my new doctors have refused to give me my pain relief, that I have been getting from my old doctor for years. It's on my notes but still told no your not having them - EXCUSE ME!!!!! Back to square one again!!!

I always have people say "get on with it" "there's nothing wrong with you"

Karen - glad to know im not alone feel bad for moaning about my situation with all the stuff you have been going through, really hope your ok.

Know what you mean about the not being able to cope just actually feel like giving up sometimes whats the bloody point when you feel like your getting nowhere???? Im turing 30 in a few months and have just recently seperated from my husband just seems to be never ending problems, i really do blame the endo it has completley changed every part of me and my life. Feeling a bit sorry for myself today as you might tell haha.

Hi! I hope you get sorted, I have what they call frozen pelvis. No surgeon will go near me now, for fear of me ending up with a colostomy bag. I had problems with my periods, but luckily had to children. 1st was an emergency section. 2nd another section, taken out of my hands due to problems (9lb 10oz baby unable to exit!!). Then I started really really bad periods, worse than they were before, and they were heavy then, always a full week, but now lasting longer.

18 months after my youngest I got rushed into hospital as my appendix went. I then returned to hospital to see a gynae as my periods were still bad, but was informed after weekly blood tests etc. that I had menorrhagia and mild neutropenia!! I so wish I had gone for a second opinion then!! My white & red blood cells were all over the place throughout the month - and there was a monthly pattern. I also told them my mum had bad endo and had to have a full hysterectomy.

I had an op for an umbilical hernia (I have doubts), which they left stitches in!!

I then discovered a lump above my c-section scar, to be told it was another hernia!. They operated - and at last a surgeon told me I had ectopic endo!!

He referred me to a gynae, I requested a full hysterectomy aged 38, knowing the suffering my mum had gone through. After 3 hours surgery they took one ovary with a 12cm cyst, and could not locate the left. A bowel & bladder specialist came into theatre whilst I was under and advised the surgeon to go no further as it was too risky - frozen pelvis! I was literally gutted! Went for a second opinion - but they saw my records and said no can do!

After 6 months of Prostap, I have been put on Norethisterone 3 times a day. They stop the periods - but I am nearly 40, how long can I take this for? Previous to this the pains I had were shooting pains when needing to pass poo (sorry for TMI) pulling and twisting pains that were pulling down in my rib cage, stomach area, and a weird in my shoulder

I have moderate-severe endo just about everywhere. I had my first lap in sept after pestering the Dr for a few years about painful bowel movements and painful wee's during my period. I'd started to suffer with pain a few years ago, it was getting worse each month. I passed out on two occasions due to the pain. I really did think i was going to die while on the loo, it worried me that much that i didnt use to eat anything for the a few days at the begining of a period.

I expected them to find something at my lap, i just knew that i couldn't be having this pain for the same days in my cycle every month without a good reason. However i was shocked to see how bad the rest of me was. They found a bad patch on my bowel, and bladder and ahdesion sticking everything to everything. They couldnt remove the endo because it would of been dangerous to my bladder, bowel ureta and kidney.

I was put on a 6 month course of zoladex in the hope that it will shrink enough to be removed. Just waiting for my appointment to come. The plan is that i will be going to a different hospital and will have other surgeons to deal with the different bits and pieces. I understood that its the kidney and ureta that they're most concerned about. I was told that not many sufferers get it on their uretas.

I all so had the mirena coil fitted during my lap not sure if its helping or not. The zoladex stopped my periods (well mostly). Waiting to see if it all starts up again now that my 6 months on zoladex is over.

I'm so glad to have found this site, i don't know anyone who has endo, so its great to know there are people out there that understand! xx

I could have wrote this myself, I'm in hospital next Monday for major bowel, bladder, pelvis and cyst removal from ovary, 8cm chocolate cyst... I will be having bowel resection and a possible colostomy bag for a few months...

I have just completed an unseccessful round of IVF and am 26... It's a terrible situation... I'm totally numb to it all now and fed up of even thinking about it. The only one bit of good news is that I was put on the Prostap injection ( which can only be taken for 6 months) it completely puts u on the menopause and makes that 6 months pain free... Worth a go for the people not trying for babies xxx